Abstract

The purpose of the study was to describe the initial decision making processes employed by parents of newborn infants who have life threatening congenital disorders . In particular, the moral questions associated with treatment related decisions and their meaning to parents was explored. Intensive, in-depth interviews were conducted with 31 parents representing 20 families who had an infant with a LTCD. ;The parents describe a theme that transcends the variety of diagnoses and prognoses of the infants themselves, that is, what it means to be a "good parent" for an infant with a LTCD. The language of good parenting reflects the core values that the parents themselves ascribe to their role rather than implying a value judgement about the quality of their parenting. This is the integrative theme of the study. The substantive theory describes the cycle of parental decision making for an infant with a LTCD based on an emerging model of good parenting. The cycle of good parenting reflects the processes and strategies used by parents to make treatment decisions for their infant. The central theme that mediates the cycle of parental decision making is an assessment of fidelity to the parent's conception of good parenting. The dimensions of good parenting included: unconditional love, sacrifice, hope, humility, integrity, advocacy, presence, parental contributions, and family integrity. These dimensions constitute the ideal and provide a standard from which parents can evaluate themselves and their actions based on their ability to be faithful to their view of parental obligations and core values and commitments. The decision making cycle is viewed within this context. The cycle of initial decision making is mediated by uncertainty, ambivalence, the parent's ongoing search for meaning, and the external influences or pre-conditional factors. ;The findings of this study suggest that a model of ethical decision making that supports the parents' quest to remain faithful to their conception of good parenting would enhance their participation. The current model of shared decision making must be re-conceptualized to focus on the process and context of treatment decisions rather than the discrete decision itself. Further research to verify the generalizability of these findings to other populations is suggested